Increasing evidence demonstrates that the Aboriginal population experience greater health disparities and receive a lower quality of health care services. The Canadian Nurses Association (CNA) code of ethics states that nurses are required to incorporate culture into all domains of their nursing practice and ethical care. The aim of this article is to examine the concepts of cultural competency and cultural safety by way of relational ethics. To address these disparities in health care, cultural competency training programs are being widely (...) advised. Recent research into cultural safety has not only recognized the importance of culture in nursing practice and organizational structures, but also extended the concepts to the culture of the client. In recognizing this diversity, nurses must pay close attention to their relationships with their clients. It is argued that the answers lie in relational ethics, which honors indigenous people’s connection to self, others, the environment, and the universe. (shrink)

Millions of people in various parts of the world and within each country are presently surviving in categories described as “mere”, “miserable”, “idealistic”, “irresponsible”, and “acceptable”. The term “acceptable survival” is proposed as a bioethical goal of global survival, looking beyond the 21st century to the year 3000 and beyond. The frequently used alternative term is “sustainable development”, but in most contexts this is an economic concept and does not imply any moral or ethical constraints, except where these are spelled (...) out. Acceptable survival, broadly defined, means acceptable to a universal sense of what is morally right and good and what will continue in the long term. The expanding dominant, but irresponsible, world culture is not an acceptable type of development because it cannot survive in the long term. [M&GS 1995:185–191]. (shrink)

Critical congenital heart disease screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include the (...) treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand. (shrink)

Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...) secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases. -/- Underneath this definitional confusion is a general notion, supported by much of the literature, that findings only need to be disclosed when they surpass certain presumably objective or measureable thresholds, such as medical importance or scientific reproducibility. The problem is that there is significant variability in the way that these terms and concepts are used in the literature and, as such, in defining the scope of an obligation to return findings that surpasses the relevant thresholds. -/- The goal of this paper is to analyze the definitional muddle underlying the debate about returning genetic research findings, with the hope of answering a few questions. First, what is the range of definitions being used in this debate? Based on an extensive literature review, Part 1 will lay out a range of articulated definitions for each relevant term, with the goal of categorizing them into a handful of distinct types. Part 2 explains the definitional redundancy and confusion in the current literature, and, drawing from the terminological patterns identified in Part 1, outlines more cohesive building blocks to inform the development of future disclosure frameworks.Our minimum goal in articulating these conceptual building blocks is to promote clearer articulations of, and distinctions between, future disclosure frameworks. More ambitiously, we suggest which definitions and conceptualizations we consider most appropriate to use in future disclosure frameworks. Here, we seek to balance benefits to participants through the disclosure of important information with the minimization of undue burdens on individual researchers and the research enterprise more generally. -/- Our analysis builds upon the central philosophical distinction between concepts and conceptions. The basic idea is that the “concept” of X refers to the general (and relatively uncontroversial) structure/shape of X, while various “conceptions” of X are more particular, filled out, and controversial elaborations of the concept. In other words, “concepts” of X will be formal representations of X, while “conceptions” of X will be substantive interpretations of the key elements and relationships operating within that formal framework. (Implicit in this distinction is an important point about the nature of disagreement – namely, that in order for two or more parties to “disagree” about X as opposed to simply talk past one another, there must be at least enough shared agreement about X to know that the parties are referring to the same thing. A concept of X provides this point of common agreement, while competing conceptions of X mark the areas where disagreement arises.) In this paper, we will employ this distinction in a fundamental way to clarify exactly where the primary disagreements arise in the debate over disclosing genetic research findings. -/- We propose that, underlying all the seeming confusion and disagreement, there are three central and widely agreed upon concepts at work in this debate—validity, value, and volition. The first two concepts concern the nature of the information itself. An obligation to disclose only exists when findings are valid and have value but there are competing conceptions of how to determine or define validity and valuableness. The third concept—volition—pertains not to the information but rather to the person to whom it will be disclosed. Does that person want or not want the information, and what is the best way of determining this? Here, too, competing conceptions arise. Our key point, though, is that almost all of the ethical disagreement arises because of competing conceptions of these three concepts. Understanding and appreciating this key point can help to refocus the substantive debate by providing some common ground to start from in determining how best to interpret these shared concepts. This refocusing can, ideally, produce more productive debate and facilitate some progress in resolving it. (shrink)

Philosophers have been long interested in delusional beliefs and in whether, by reporting and endorsing such beliefs, deluded subjects violate norms of rationality (Campbell 1999; Davies & Coltheart 2002; Gerrans 2001; Stone & Young 1997; Broome 2004; Bortolotti 2005). So far they have focused on identifying the relation between intentionality and rationality in order to gain a better understanding of both ordinary and delusional beliefs. In this paper Matthew Broome and I aim at drawing attention to the extent to which (...) deluded subjects are committed to the content of their delusional beliefs, that is, to whether they can be regarded as authors of their beliefs (Moran 2001). We consider several levels of commitment one can have to a reported belief, delusional or otherwise, and we distinguish between _ownership_ and _authorship_ of beliefs (Gallagher 2000). After examining some examples of belief authoring (or lack thereof) in psychopathology, we argue that there is no straight-forward and unitary answer to the question whether deluded subjects author their beliefs. Nevertheless, introducing the notion of authorship in the debate can significantly contribute to the philosophical literature on the rationality of delusions and can also have important implications for diagnosis and therapy in psychiatry. (shrink)

Mike Savage & Anne Witz, eds., Gender and Bureaucracy, Blackwells, Oxford, 1992, pp. 282, pb, £13.99, ISBN: 0631‐85283.

It has been argued that schizophrenic delusions are “behaviourally inert.” This is evidence for the phenomenon of “double bookkeeping,” according to which people are not consistent in their commitment to the content of their delusions. The traditional explanation for the phenomenon is that people do not genuinely believe the content of their delusions. In the article, we resist the traditional explanation and offer an alternative hypothesis: people with delusions often fail to acquire or to maintain the motivation to act on (...) their delusional beliefs. This may be due to avolition, to emotional disturbances, or to the fact that, given the peculiar content of some delusions, the surrounding environment does not support the agent’s motivation to act. (shrink)

What factors should be taken into account when attributing criminal responsibility to perpetrators of severe crimes? We discuss the Breivik case, and the considerations which led to holding Breivik accountable for his criminal acts. We put some pressure on the view that experiencing certain psychiatric symptoms or receiving a certain psychiatric diagnosis is sufficient to establish criminal insanity. We also argue that the presence of delusional beliefs, often regarded as a key factor in determining responsibility, is neither necessary nor sufficient (...) for criminal insanity. (shrink)

Movement of leukocytes from peripheral blood into tissues, also called leukocyte extravasation, is absolutely essential for immunity in higher organisms. Over the past decade, our understanding of the molecular mechanisms involved in white blood cell extravasation during both normal immune surveillance and the generation of protective immune responses has taken a great leap forward with the discovery of the chemokine gene superfamily. Chemokines are low-molecular-weight cytokines whose major collective biological activity appears to be that of chemotaxis of both specific and (...) overlapping subsets of leukocytes. They are therefore likely to play a critical role in the directed movement of leukocytes from the bloodstream into tissue. These molecules are almost exclusively secreted and act as extracellular messengers for the immune system. However, emerging data also show that various members of the chemokine gene superfamily exert other biological effects outside the immune system. All nucleated cells and all tissues examined to date are capable of expressing at least some chemokines, and it seems likely therefore that by the time all the chemokines are identified, and all their biological functions elucidated, we will find that, as a family, these molecules perform an extracellular messenger role in all tissues and systems of the body. BioEssays 1999;21:17–28. © 1999 John Wiley & Sons, Inc. (shrink)

DNA replication requires the unwinding of the parental duplex, which generates (+) supercoiling ahead of the replication fork. It has been thought that removal of these (+) supercoils was the only method of unlinking the parental strands. Recent evidence implies that supercoils can diffuse across the replication fork, resulting in interwound replicated strands called precatenanes. Topoisomerases can then act both in front of and behind the replication fork. A new study by Sogo et al. [J Mol Biol 1999;286:637–643 (Ref. 1)], (...) using a topological analysis, provides the best evidence that precatenanes exist in negatively supercoiled, partially replicated molecules in vivo. BioEssays 21:805–808, 1999. © 1999 John Wiley & Sons, Inc. (shrink)

Margaret Cavendish's prolific and wide-ranging contributions to seventeenth-century intellectual culture are impossible to contain within the discrete confines of modern academic disciplines. Paying attention to the innovative uses of genre through which she enhanced and complicated her writings both within literature and beyond, this collection addresses her oeuvre and offers the most comprehensive and multidisciplinary resource on Cavendish's works to date. The astonishing breadth of her varied intellectual achievements is reflected through elegantly arranged sections on History of Science, Philosophy, Literature, (...) Politics and Reception, and New Directions, together with an Afterword by award-winning novelist Siri Hustvedt. The first book to cover nearly all of Cavendish's major works in a single volume, this collection brings together a variety of expert perspectives to illuminate the remarkable ideas and achievements of one of the most fascinating and prolific figures of the early modern period. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesAustin Morris, Lisa P., Jeanne Kerwin, Jean Watson, Eve Makoff, Brent R. Carr, Anonymous One, Michelle Prong, Laura J. Hoeksema, Tracy R. Wilson, Frances Rieth Maynard, Laura A. Katers, and Maggie Taylor• Against Their Wishes: The Gift of a Goodbye• Lisa’s Story• Unbefriended• The Clinical Ethics Consult: Transforming Ambivalence to Action• Side Stepping The Issues: Disappointment With An Ethics Consult For A Medically (...) High Risk Patient• My Father Dies Alone• Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill Neonate• The Healing Power of an Ethics Consult• Clinical Ethicists: Can They Help Families in Their Times of Need?• “It’s All Personal”• Fault Lines• Difficult, Difficult, Lemon, DifficultCopyright © 2024 Johns Hopkins University Press... (shrink)

Alienation and Connection addresses social constructs that perpetuate alienation through suffering. The contributors discuss how alienation through suffering in a variety of contexts can be transformed into connection and reconnection: human relationship with the environment, economic and social systems that disconnect and reconnect, cultural constructs that divide or can heal, encountered difference that brings opportunity, and various manifestations of personal pain that can be survived and even overcome.

This study investigated the cognitive processes involved in inductive reasoning. Sixteen undergraduates solved quadratic function–finding problems and provided concurrent verbal protocols. Three fundamental areas of inductive activity were identified: Data Gathering, Pattern Finding, and Hypothesis Generation. These activities are evident in three different strategies that they used to successfully find functions. In all three strategies, Pattern Finding played a critical role not previously identified in the literature. In the most common strategy, called the Pursuit strategy, participants created new quantities from (...) x and y, detected patterns in these quantities, and expressed these patterns in terms of x. These expressions were then built into full hypotheses. The processes involved in this strategy are instantiated in an ACT‐based model that simulates both successful and unsuccessful performance. The protocols and the model suggest that numerical knowledge is essential to the detection of patterns and, therefore, to higher‐order problem solving. (shrink)

A good therapeutic relationship in mental health services is a predictor of positive clinical outcomes for people who seek help for distressing experiences, such as voice hearing and paranoia. One factor that may affect the quality of the therapeutic relationship and raises further ethical issues is the impact of the clinical encounter on users’ sense of self, and in particular on their sense of agency. In the paper, we discuss some of the reasons why the sense of epistemic agency may (...) be especially fragile in young people with unusual experiences and beliefs. We argue that it is important to identify and avoid behaviours that can undermine young people’s contributions as epistemic agents in the clinical encounter. (shrink)

This commentary responds to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?” We argue that Gorin's case against pediatric gender‐affirming care rests upon numerous false conceptual binaries: female/male, public/private, objective/subjective, and medically necessary/elective. Drawing on feminist bioethics, we show how such dichotomous thinking is both inaccurate and marginalizing of gender minorities.

Scientific peer reviewers play an integral role in the grant selection process, yet very little has been reported on the levels of participation or the motivations of scientists to take part in peer review. The American Institute of Biological Sciences developed a comprehensive peer review survey that examined the motivations and levels of participation of grant reviewers. The survey was disseminated to 13,091 scientists in AIBS’s proprietary database. Of the 874 respondents, 76% indicated they had reviewed grant applications in the (...) last 3 years; however, the number of reviews was unevenly distributed across this sample. Higher review loads were associated with respondents who had submitted more grant proposals over this time period, some of whom were likely to be study section members for large funding agencies. The most prevalent reason to participate in a review was to give back to the scientific community and the most common reason to decline an invitation to review was lack of time. Interestingly, few suggested that expectation from the funding agency was a motivation to review. Most felt that review participation positively influenced their careers through improving grantsmanship and exposure to new scientific ideas. Of those who reviewed, respondents reported dedicating 2–5% of their total annual work time to grant review and, based on their self-reported maximum review loads, it is estimated they are participating at 56–87% of their capacity, which may have important implications regarding the sustainability of the system. Overall, it is clear that participation in peer review is uneven and in some cases near capacity, and more needs to be done to create new motivations and incentives to increase the future pool of reviewers. (shrink)

The representational distortion (RD) approach to similarity (e.g., Hahn, Chater, & Richardson, 2003) proposes that similarity is computed using the transformation distance between two entities. We argue that researchers who adopt this approach need to be concerned with how representational transformations can be determined a priori. We discuss several roadblocks to using this approach. Specifically we demonstrate the difficulties inherent in determining what transformations are psychologically salient and the importance of considering the directionality of transformations.

In recent years, there has been a particular emphasis placed on conducting randomized controlled trials (RCTs) that compare the relative efficacy of psychosocial and pharmacological interventions. This article addresses relevant ethical considerations in the conduct of these treatment trials, with a focus on RCTs with children. Ethical concerns, including therapeutic misconception, treatment preference, therapeutic equipoise, structure of treatments, and balancing risks versus benefits, are introduced through a clinical scenario and discussed as they relate to psychotherapy versus medication RCTs. In each (...) case, suggestions are made for researchers seeking to minimize the impact of these ethical concerns on research participants. (shrink)

Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally complicates medical researchers’ efforts to parse outcomes “objectively.” Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health (...) risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically. (shrink)

This article presents the Pilgrimage Model as a template for educators wishing to lead students on site-specific studies of engaged learning. During the 2015–2016 academic year, a group of Georgeto...

ObjectiveMost young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds.MethodsWe systematically adapted an empirically supported, theoretically grounded couple-based intervention to address (...) the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors participated throughout the adaptation process.ResultsFindings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: A highly flexible intervention that can be tailored to couples’ specific RSH concerns; Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns.ConclusionThe systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship. (shrink)

This paper examines the current position of copyright for the music industry in the light of innovation and diffusion of technologies which enable audio file sharing amongst web users. We note that there currently appears to be conflicting assessments between the major corporations and the many small firms in Europe with regard to the business potential for online music. In particular, we show that the convergence of technologies together with the emergence of particular practices of ‘net culture’ have posed a (...) number of marketing opportunities and threats for industry incumbents. The role of the Napster program, as well as subsequent innovations in peer‐to‐peer software, is examined together with the responses that have been made by different sections of industry. (shrink)

Interventions to decrease acquisition and transmission of sexually transmitted diseases among African American women using text messages versus small-group delivery modalities pose distinct research risks and benefits. Determining the relative risk–benefit ratio of studies using these different modalities has relied on the expertise of investigators and their institutional review boards. In this study, African American women participated in focus groups and surveys to elicit and compare risks and benefits inherent in these two intervention delivery modalities, focusing on issues such as (...) convenience, privacy, and stigma of participation. Some risk/benefit variables were implicated in willingness to participate the two intervention modalities. (shrink)

Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently described form of discrimination. The range and significance of experiences associated with this form of discrimination are not yet well known and are investigated in this study. Methods. Individuals at-risk to develop a genetic condition and parents of children with specific genetic (...) conditions were surveyed by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination. (shrink)

Historically, entities with a vested interest in a product that critics have suggested is harmful have consistently used research to back their claims that the product is safe. Prominent examples are: tobacco, lead, bisphenol A, and atrazine. Research literature indicates that about 80–90% of studies with industry affiliation found no harm from the product, while only about 10–20% of studies without industry affiliation found no harm. In parallel to other historical debates, recent studies examining a possible relationship between mercury exposure (...) and autism spectrum disorder show a similar dichotomy. Studies sponsored and supported by industry or entities with an apparent conflict of interest have most often shown no evidence of harm or no “consistent” evidence of harm, while studies without such affiliations report positive evidence of a Hg/autism association. The potentially causal relationship between Hg exposure and ASD differs from other toxic products since there is a broad coalition of entities for whom a conflict of interest arises. These include influential governmental public health entities, the pharmaceutical industry, and even the coal burning industry. This review includes a systematic literature search of original studies on the potential relationship between Hg and ASD from 1999 to August 2015, finding that of the studies with public health and/or industry affiliation, 86% reported no relationship between Hg and ASD. However, among studies without public health and/or industry affiliation, only 21% find no relationship between Hg and ASD. The discrepancy in these results suggests a bias indicative of a conflict of interest. (shrink)

The application of evidence-based medicine helps clinicians avoid unnecessary procedures and decreases unnecessary harm for future patients while sparing economic burdens. Randomised controlled trials (RCTs) most accurately produce best research evidence. In arthroscopic surgery, however, many procedures have been extensively used without supportive evidence verified with RCTs. In this paper, we introduce two procedures (arthroscopic partial menisectomy for degenerative knees and arthroscopic subacromial decompression for subacromial pain syndrome), where over 30 years of procedure usage has continued prior to garnering evidence (...) for the inefficacy of the procedures. The situations are attributed to the fact that clinical trials in arthroscopic surgeries are challenging given the use of placebo controls. A placebo-control RCT can accurately answer research questions about efficacy and safety of surgical procedures; however, the majority of arthroscopic surgeries in practice have not been rigorously tested against placebo surgeries. This is because preparing surgical placebo controls, known as sham surgeries, are ethically controversial. Also considering that high-quality study results often do not change clinical practice due to insufficient knowledge translation, the benefits of such trials may be uncertain to society at large. Additionally, there are a lack of clear guidelines for conducting arthroscopic placebo surgeries in RCTs. We hope that this article helps drive discussion about appropriate use of placebo surgeries in RCTs to produce the best quality evidence in arthroscopic surgery. (shrink)